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lynn

Moving From PANDAS to CANS?

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I truly don't understand why everyone is so angry. My child has PANDAS. However, Singers discovery about glutamate and kurlans discovery about the low dose dopamine agonist for tourettes have helped my son tremendously. Swedo's discovery also helped my son. Kurlan and Singer even admit that the current treatments for tourettes have serious side effects and they are looking for new drugs and procedures that don't induce the same problems as current psychotropic medications. It's not as if these doctors are sitting around and doing nothing at all. I think it's good that doctors debate back and fourth. Singer and Kurlan do make some valid points. If you look on Dr. T's webpage, he posted an article a while back about gene discovered in tourettes. I believe is has to do with histamine transmission. Singer wrote an article not that long ago too about H3 antagonists being used for tourettes as a novel treatment. Currently there are drugs in clinical trials to modulate histamine & glutamate most likely because of Singer. I'm sorry but to bash doctors like that, I find to be incredibly inappropriate. Unless you are on the inside and you know their exact intentions, you cannot just trash what they say. Frankly, some of their discoveries have helped A LOT. Everyone here is so focused on the "root cause," only because the current drugs or past drugs have side effects. That may not always be the case. Would you spend hours upon hours on a forum researching allergies or just take zyrtec?

 

The forum allows one to post immediately. Professionally my responses would be the one I send 'tomorrow.'

 

But why we are so angry, at least for us, we practically begged he who will now be known as 'S' to search for other causes going over the symptoms time and time again. He refused. I won't say that I recall him directly bashing other doctors but on our last visit, without me even saying the word PANDAS (we had recently learned of it), he looked at me and said something very close to "If you're asking me if I believe in PANDAS, I don't." End of discussion. No further testing. At the time, I had not learned much beyond the name and sat there on my CANS.... I've promised myself never to do that again.

 

That was the start of our journey towards real healing to include finding this forum. Our son, who will be 14 this spring, has been steadily improving for the last 16 months. He was steadily going downhill since the age of 4.

 

Really though, 'S' represents the last in a long line of frustrations with doctors. As another poster stated, I have nothing against doctors who say they can't, won't, or are unable to treat. I do have an issue with being mocked. And yes - my wife and I both felt that we had just been mocked that day.

 

Yes. Let's give credit where credit is due. 'S' has probably done many great things through his career. Publicly patronizing PANDAS is not one of them. As I stated in my earlier post, perhaps his views are now changing. Awesome. Glad to have him in the fight. But pardon me if I still feel the sting.

 

(BTW - 'S' early study following up on Swedo's study that negated Swedo's results was a reprehensible study. Even without a medical degree I can tell you that he took her premise, did not follow her selection criteria, and then found that his results did not support her findings. Duh! Now how does something so sloppy even get published?)

 

And no, I would not spend hours upon hours researching allergies. But then again, allergies never turned my son into a homicidal stranger who was losing his mobility and becoming emotionally paralyzed by OCD.

 

Please realize that this post is in no way meant to be antagonistic to anyone on this forum. Honestly just trying to explain my anger. Also, I find this forum to be therapeutic to be able to express my feelings to so many others who can say, "Yup, been there and understand."

 

Bill

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Well, I won't put my two cents in on the whole CANS/Singer/paper thing because I am pretty sure most of you know where I stand and how I feel on the subject.

 

But Bill.....I was moved to post and just tell you that your particular post sent chills up my spine. Oh how I understand and your words were just ....ummm......perfect. Also, Cunningham showed my a very detailed slide show she had put together comparing the two studies. She is so unbiased and genuine and is just simply looking for the truth. Her findings were very clear and obvious, even to me, that his controls were so way out of whack! You are right on about that....his study/findings disputing Swedo are truely worthless.

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I have never been a fan of the PANDAS acronym but removing autoimmune and changing it to acute does not work. For our situation it was completely autoimmune and in no way was acute. My son even had a positive ANA titer with each flare along with a rise in titers. We did PEX and have had several IVIGs to follow and went from a very dark, incapacitated state to now he is thriving in fourth grade. I would love to go head to head with any of these doctors any day to explain to me what happened to my son. We have a classic case, with the exception of the acute part. His presentation was waxing and waning, with each exacerbation worse than the one before.

I think this is their attempt to save face. I think Singer is one opinion and not held up as high as it was in the past.

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Bill- so perfectly put!

 

I too think that'autoimmune needs to stay in the name. Why is that such a problem? It is the relation to rhumatic fever. Also look how many of us have lupus and MS and such in the family.

 

Here is my beef with "S"..... Dr. Sweedo used antibodies from PANDAS kids as well as many of the universities that spent last summer replicating her "mouse model". Where

did S & K get their test samples from? Any of your kids? I know that our blood went to Harvard and when we went

to the A &.M symposium on PANDAS a few months ago, I

swear the poor little Harvard mouse that cleaned himself bald must have been given our son's off the chart strep antibodies!

 

We also spent /waisted too much time on doctors that mocked us and put us in our place. Can't believe that we

had to end each humiliating bashing by writing them a

check on the way out of their office!

Edited by 3boysmom

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It seems they feel compelled to define themselves and their research in some way as the antithesis to the PANDAS world, rather than striking out and carving fresh territory of their own. Constantly trying to reframe a discovery, a body of research and now even a label that wasn't theirs to begin with. Why? Ego? Unfortunately, that is not of service to our kids our the kids who find themselves unfortunately following in their footsteps. <_<

 

 

It would say it's more hubris than ego.

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These docs whom have published this article are not treating pandas, nor have they wanted to. They are just trying to establish themselves as physicians whom are aware of the acute onset, I guess at this point they cannot ignore the scientific data supporting an acute onset. My guess is that the aresenal of treatments for neuropsych acute onsets include clonodine, haldrol, tenex, lexipro. Since the cunningham test is not available to all, how can they validate the diagnosis of autoimmune. Not to mention none are rheumotologists or immunologists, I find these docs not to be credible, who cares if they are at hopkins or went to Princeton,they are more concerned about their own personal liability than helping the patient, true cowards. Don Gilbert you should be ashamed of yourself, cincinnati deserves better. Its not that far of a reach, be your own man and separate from singer.

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first - I vote for "the illness previously know as PANDAS" - so funny..

 

I have to admit, although I didn't fully read the recent paper (yet), and I don't have anything good to say about its author, when I heard Swedo et al were going to call it PANs - even I wanted to make fun of it. Clearly, pandas are to zebras as PANS are to CANs. AND, he beat them to the punch by putting something out there first, and when they do finally get the white paper out and call it PANS, they will look silly, since all of the medical community will have read about CANs first. Which looks like a re-work of the white paper with a bunch of other junk thrown in. Come to think of it, they cannot seriously use the PANS name now, so they will have to think of a new name, which they should anyway. You can't have doctors trying to remember and differeentiate between Childhood Acute-onset neuro-pyschiatric syndrome and Pediatric Acute-onset neuro-pyschiatric syndrome. It won't make any sense.

 

Why don't we all just start calling it Swedo's Disease or Rapoport's Syndrome? (Swedo is probably too humble to refer to it as her discovery ).

 

The symptoms/presentation/possible causes - shouldn't be in the actual name! It should have a unique name (that can be googled or have a website with a .com after it !!!!) and the disease can then be slightly modified if needed - for example - the "acute-onset". Usually it is, but you don't put it in the actual NAME. GEEEESH. Even it there is a chance that 1% of the cases aren't acute-onset - you just let someone read the name - and THAT is as far as they get, because it doesn't leave any leeway. Not Acute-onset? move onto the next illness on the list.

 

 

As I said I haven't read they whole thing, but it looks like plagarism of the "way forward" paper, even of the acronym. If it forces them to rename it and narrow the focus a little then I say "thank you Singer"!

 

Here's another: AIN'T LOST - this illness is defined by the group for which Anitbiotics and Ivig are Necessary Treatments to Lessen or Obliterate Symptoms Totally. I won't argue about the cause, the presentation, or the timing !

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Maybe we should sign something and send it to Dr. Swedo saying we want it named Swedo Syndrome! Or something! :)

 

These docs know their past positions are TOAST and they are about to be toast if they don't try to save face.

CANS Childhood--define childhood Acute---so what. Acute what? Neuropsychiatric--OK, they got one right. Symptoms--How can a dx be called symptoms. That's idiotic. How arrogant & pompous that they would put saving their names above helping our kids. They know they have lost. What will make me realllly angry is if Swedo et. al appears in a picture with these dudes in some article entitled: "We Believe in PANS--Now let's all get along."

 

OK, I feel better.

 

Dawn

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AND, he beat them to the punch by putting something out there first, and when they do finally get the white paper out and call it PANS, they will look silly, since all of the medical community will have read about CANs first. Which looks like a re-work of the white paper with a bunch of other junk thrown in. Come to think of it, they cannot seriously use the PANS name now, so they will have to think of a new name, which they should anyway. You can't have doctors trying to remember and differeentiate between Childhood Acute-onset neuro-pyschiatric syndrome and Pediatric Acute-onset neuro-pyschiatric syndrome. It won't make any sense.

 

 

agreed

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I just read through the very thoughtful posts here regarding the "PANDAS to CANS" paper. You all are much better at being neutral here and seeing the paper as being a first step by Dr. S towards recognizing a new illness.

 

What probably bothers me the most is the misquoting of papers.

 

In the new paper, the neurologists say "Nevertheless, there is strong evidence suggesting the absence of an important role for GABHS" citing reference 13 (Kurlan2008) and 14(Leckman2011). So I dutifully go off to see if these references support this statement. Nope.

 

The Kurlan2008 article states "The overall findings from our study suggest that children with PANDAS represent a subgroup of patients with TS or OCD who may be susceptible to GABHS infection as a precipitant of their symptoms.” And “The number of hits expected by chance alone fell slightly outside of the 95% confidence interval for the true mean number of hits, suggesting that, in PANDAS case subjects, exacerbations were significantly associated with antecedent infection (4 weeks after an infection).

 

Okay so what do you do with an article that cites as foundation for an argument a report that finds the opposite finding?

 

How about just plain false statement? In the new article, it states "GABHS carriers can have protractedly elevated anti-streptococcal antibody titers”

 

Um, absolutely not. Quoting from Pichechero, "Kaplan and associates have defined the streptococcal carrier as a patient with a positive throat culture who shows neither symptoms nor a demonstrable rise in streptococcal antibody titers." Just being very clear, this is not ASO or AntiDNAseB-- but no antibody titers. So the rise in Anti-LysoGangliosides or Anti-Tubulin or ... would also preclude the statement of carriage.

 

Then the next section "a case-control investigation of a large primary care database (255 cases and 4519 control subjects), comparing the rate of possible streptococcal infection in patients ages 2 to 25 years with OCD, TS and tic disorders, showed no overall increased risk of earlier GABHS infection as compared with matched control subjects." citing Shrag 2009.

 

Okay, off I go to check the source of this quote. So many problem with this paper. First, the children in the study did not meet th diagnostic criteria for PANDAS. Sigh. Second, the study did not actually look at GABHS -- the study used > 70 diagnostic codes from impetigo to purulent dermatitis with some "sore throat" thrown in. Most of these codes would have triggered for Staph infection .... My point is you can't use this paper for support because the paper didn't study GABHS infections relative to controls. It studied an ocean of other illnesses.

 

I just am so frustrated that both the scientist publishing their articles and apparently the editors reviewing the articles prior to publication are apparently reading the outrageous abstracts rather than the actual paper.

 

I do appreciate that folks on this thread are saying that the new paper shows that Singer and Kurlan are moving, but guys, revisionist history, poor quoting and knowingly false statements just shouldn't make it into scientific publications (okay, I appreciate I'm not being realistic given the politics here, but come on...). I keep thinking about how the Le Roy neurologists are quoting this "PANDAS to CANS" paper as the reason that they've excluded PANS or PANDAS. Eghads. How can this horrible article be cited as evidence instead of the random misstatements and misrepresentation of science that it is. Can you believe it doesn't even reference Hornig's work on the mouse validation of the antibody transfers? Or Kirvan's work on the antibody isolation? Unbelievable.

 

Buster

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I just read through the very thoughtful posts here regarding the "PANDAS to CANS" paper. You all are much better at being neutral here and seeing the paper as being a first step by Dr. S towards recognizing a new illness.

 

What probably bothers me the most is the misquoting of papers.

 

In the new paper, the neurologists say "Nevertheless, there is strong evidence suggesting the absence of an important role for GABHS" citing reference 13 (Kurlan2008) and 14(Leckman2011). So I dutifully go off to see if these references support this statement. Nope.

 

The Kurlan2008 article states "The overall findings from our study suggest that children with PANDAS represent a subgroup of patients with TS or OCD who may be susceptible to GABHS infection as a precipitant of their symptoms.” And “The number of hits expected by chance alone fell slightly outside of the 95% confidence interval for the true mean number of hits, suggesting that, in PANDAS case subjects, exacerbations were significantly associated with antecedent infection (4 weeks after an infection).

 

Okay so what do you do with an article that cites as foundation for an argument a report that finds the opposite finding?

 

How about just plain false statement? In the new article, it states "GABHS carriers can have protractedly elevated anti-streptococcal antibody titers”

 

Um, absolutely not. Quoting from Pichechero, "Kaplan and associates have defined the streptococcal carrier as a patient with a positive throat culture who shows neither symptoms nor a demonstrable rise in streptococcal antibody titers." Just being very clear, this is not ASO or AntiDNAseB-- but no antibody titers. So the rise in Anti-LysoGangliosides or Anti-Tubulin or ... would also preclude the statement of carriage.

 

Then the next section "a case-control investigation of a large primary care database (255 cases and 4519 control subjects), comparing the rate of possible streptococcal infection in patients ages 2 to 25 years with OCD, TS and tic disorders, showed no overall increased risk of earlier GABHS infection as compared with matched control subjects." citing Shrag 2009.

 

Okay, off I go to check the source of this quote. So many problem with this paper. First, the children in the study did not meet th diagnostic criteria for PANDAS. Sigh. Second, the study did not actually look at GABHS -- the study used > 70 diagnostic codes from impetigo to purulent dermatitis with some "sore throat" thrown in. Most of these codes would have triggered for Staph infection .... My point is you can't use this paper for support because the paper didn't study GABHS infections relative to controls. It studied an ocean of other illnesses.

 

I just am so frustrated that both the scientist publishing their articles and apparently the editors reviewing the articles prior to publication are apparently reading the outrageous abstracts rather than the actual paper.

 

I do appreciate that folks on this thread are saying that the new paper shows that Singer and Kurlan are moving, but guys, revisionist history, poor quoting and knowingly false statements just shouldn't make it into scientific publications (okay, I appreciate I'm not being realistic given the politics here, but come on...). I keep thinking about how the Le Roy neurologists are quoting this "PANDAS to CANS" paper as the reason that they've excluded PANS or PANDAS. Eghads. How can this horrible article be cited as evidence instead of the random misstatements and misrepresentation of science that it is. Can you believe it doesn't even reference Hornig's work on the mouse validation of the antibody transfers? Or Kirvan's work on the antibody isolation? Unbelievable.

 

Buster

Thank you!!!

 

Do you think this is enough to demand a retraction of the article?

 

Do you have any idea how to even start such a process?

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Thank you!!!

 

Do you think this is enough to demand a retraction of the article?

 

Do you have any idea how to even start such a process?

 

I don't. But do wonder if someone on this distribution might. Here's how I see the paper:

  • it is a minority position paper -- the 5 named neurologists apparently agreed with the NIH conference about the creation of a broader category, but disagreed with the criteria of the conference.
  • the paper does not fit the critiera for publication -- It is neither a report of "latest advancements" nor a presentation of "logical conclusions and recommendations" (see www.jpeds.com/authorinfo)
  • the paper has factual inaccuracies -- (such as the statement that GABHS carriers can have protractedly elevated titers).
  • the paper misrepresents findings of other papers -- it cites other articles as supporting positions when those citations hold contrary positions to the statement being made. This is either poor research or knowing misrepresentation.
  • the paper is exceedingly self-citing -- the bibliography has over 50% of the papers being by the same author
  • the paper fails to present evidence counter to their position -- The paper is missing papers and evidence contrary to the authors position such as Kirvan's Nature paper or the great work by Hornig.
  • the authors make dangerous treatment recommendations in a field in which they are not experts. -- The authors state that "recommended treatments for OCD are selective serotonin reuptake inhibitors". This is a treatment, but not the recommended treatment -- especially for pre-pubescent children. ERP and CBT is the recommended therapy with SSRIs being used under extremely close monitoring due to black-label risk of suicide. Multiple reports (including the work by Murphy and Storch) cite extreme sensitivity in kids meeting PANDAS criteria to anti-dopaminergic drugs.

 

I could go on and on. I hate bad science and worse these pseudo science papers that set things back because they move from a focus on etiology and pathogenesis to creating categories of symptoms as if that is meaningful. Great so we know there are kids with acute OCD and Tics -- the point is whether we can treat the condition, not whether we can name it. Grrr...

Wow!!! Again, Thank you :wub:

 

So, I've done a bit of googling. I'm thinking the best we could hope for would be a withdrawal of the article. Retraction seems to be kind of rare and has a stigma attached to it. Although, to misrepresent your OWN work is IMHO blatantly unethical. This particular article is considered in press, which means that it is just waiting for a slot to be included in the main journal, but in press articles are made available to their subscribers because it helps to keep doctors up to date. Perhaps we have a better chance because it is still in press???

 

Without knowing anything about this type of process, I would guess the first step is to contact the editorial board. But, I don't know if a full out email/letter campaign is going to be really effective here...especially from a yokel like me

 

Another thing that I was thinking was that if I were Leckman, I'd be livid that my work was being misconstrued. He must have some recourse.

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Thank you!!!

 

Do you think this is enough to demand a retraction of the article?

 

Do you have any idea how to even start such a process?

 

I don't. But do wonder if someone on this distribution might. Here's how I see the paper:

  • it is a minority position paper -- the 5 named neurologists apparently agreed with the NIH conference about the creation of a broader category, but disagreed with the criteria of the conference.
  • the paper does not fit the critiera for publication -- It is neither a report of "latest advancements" nor a presentation of "logical conclusions and recommendations" (see www.jpeds.com/authorinfo)
  • the paper has factual inaccuracies -- (such as the statement that GABHS carriers can have protractedly elevated titers).
  • the paper misrepresents findings of other papers -- it cites other articles as supporting positions when those citations hold contrary positions to the statement being made. This is either poor research or knowing misrepresentation.
  • the paper is exceedingly self-citing -- the bibliography has over 50% of the papers being by the same author
  • the paper fails to present evidence counter to their position -- The paper is missing papers and evidence contrary to the authors position such as Kirvan's Nature paper or the great work by Hornig.
  • the authors make dangerous treatment recommendations in a field in which they are not experts. -- The authors state that "recommended treatments for OCD are selective serotonin reuptake inhibitors". This is a treatment, but not the recommended treatment -- especially for pre-pubescent children. ERP and CBT is the recommended therapy with SSRIs being used under extremely close monitoring due to black-label risk of suicide. Multiple reports (including the work by Murphy and Storch) cite extreme sensitivity in kids meeting PANDAS criteria to anti-dopaminergic drugs.

 

I could go on and on. I hate bad science and worse these pseudo science papers that set things back because they move from a focus on etiology and pathogenesis to creating categories of symptoms as if that is meaningful. Great so we know there are kids with acute OCD and Tics -- the point is whether we can treat the condition, not whether we can name it. Grrr...

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